When to Say "When"

Everyone needs to know when to say "when."  It is something that I definitely need to learn more. I will admit that I was never one to quit until something was finished or when I had done all that I could. I always believed that I could just do a little more and do it a little better. 

For instance, I believe I said last year in a blog around this time of year that I was done hosting Thanksgiving dinners. I explained that it was just too complicated for me to coordinate all the dishes to make sure everything was ready on time. It was also way too exhausting for me to complete.

I actually did remember that this year, but Thanksgiving, to me, is a family day. The only family I have near me is my sister and her husband. Unfortunately, she fell several weeks back and shattered her shoulder which required a total replacement. There was no way she could help, much less do it all. So, of course, I called and invited them over. 

Everyone said the meal was wonderful, but I know better. I could tell that most of the dishes were cold because I didn't do a good job of coordinating them all. I could tell how dried out the turkey was because I forgot to keep an eye on it. I learned how tough the turkey was the next day when I wd as preparing leftovers and my husband requested that I "find some tender pieces for him because all that he ate yesterday was too tough to chew." Guess who was told to fix his own turkey?

I had actually considered picking up one of those pre-cooked feasts from one of the local restaurants offering them. You pick them up the day before and then just have heat everything up. I knew they wouldn't be as good as homemade, so I couldn't accept that it would do. Next year, I hope I remember that even though I tried to make the meal simpler than usual, it was still too much. I needed to say "when" and that I had to stop trying to host the meal. I must say, though, that even with the frustration of doing the meal this year, I would never give up sharing the day with my family.

I am going to use this newfound knowledge when it comes to decorating for Christmas. I have about ten totes full of Christmas decorations, not including the tree and trimmings. I went downstairs this morning and pulled out less than two totes worth of decorations and am going to do my darnedest to stick to it. I already told my daughter that I was not putting up the tree. I figure it was to do all the decorating and forego cookie baking or the other way around. At least after Christmas, the cookies don't have to be taken down, boxed up and hauled downstairs.

It isn't just the holidays that require knowing when to say enough is enough. There are times I need to do things like totally staying away from the support groups for a few days. It isn't very difficult to ignore the support groups for caregivers as well as those with FTD because those are the ones that drain me the most. It is not pleasant to read caregivers talking about and criticizing the person they care for. In fact, it is very sad and depressing at time. It is the groups that are just for those of us with FTD that are nearly impossible for me to ignore. 

I get so much support from everyone else with FTD and feel guilty, beyond belief, if I am not there to support them just as much. I do not need to avoid these groups as much as the caregiver groups, but I need to know when it is time to say "when."  I am trying to learn that some days, if I am feeling depressed and not feeling like communicating, that this is probably not the time to be commenting or advising anyone about anything. If I cannot stay away (which is about 98% of the time) I am learning to just read through in case someone does need some urgent support. I may click on "like" or something with just a couple words, but try to not share my negativity and general grumpiness. In this, I am actually making progress on saying "when" and need to keep it up.

The next, and maybe largest, thing I have to learn is that I need to not count on others to do things for me. The hardest portion of this is to not rely on friends. Just when I have reached the point of saying that I have given up on friends, a friend will actually get in touch with me. They will do things with me, usually nice things like take me out somewhere even to just get out of the house. Unfortunately, it seems like everyone's limit is three times. We will go out and, to me, it seems like we are having a great time. I certainly know that I am and I truly believe the other person is as well.

Just as I am feeling great and enjoying myself, the calls and visits come to an end. I call them or send a message, just to say hello. They will usually say something about getting together soon. Soon never seems to come. Of course, with the paranoia I have with my FTD, I am always sure I offended them or did something wrong. I wrack my brain (what is left of it) and cannot come up with anything. It always seems like they were enjoying our time together just as much as I was. 

These experiences are extremely heartbreaking. I wonder if it is not time to say "when" on counting on having friends. They certainly seem to have the ability to decide when to say "when" with their dealing with me. It's like I climb out of my non-socialization hole for a few weeks, then it is "wham" back in the hole and it is just a little deeper each time. 

I have to remember how exhausting it can be to deal with someone with FTD. It can be difficult for them to realize just why I have to be home before sundown. It is probably quite frustrating to listen to me tell them the same stories over and over again. It can probably be exhausting to try to figure out what I am trying so say when my words are not coming out correctly. It is possible that, even though I think we are having fun, to others it is not worth dealing with all the baggage I bring with me.

It is certainly when to say "when" with this blog entry. I am not as depressed as this has made me sound. I am, though, still exhausted from the holiday and the thought of preparing for the next one. At least I don't do a big Christmas dinner. We have brunch which is much easier and is a very informal buffet. Some of us are even still in our pj's. You may want to read that as "Cindy is usually still in her pj's" and add in that she is drinking another Mimosa!

Narcissists Are Not Great Caregivers

I am sure all, or at least most, people are familiar with the mythological character of Narcissus who was so impossibly handsome that he fell in love with his own image in a pool of water. Ergo, the term "narcissists".  Several things have been brought to mind recently that centered around narcissistic people.

Narcissistic people tend to not be good caregivers. Obviously, it can cause a problem because they tend to think of themselves instead of the one for whom they are caring. This is not the best case scenario for care giving, but can actually still work if there is enough room for thinking of the one with dementia as well as themselves. 

Unfortunately, I have known several people who have become caregivers for their own selfish reasons.  In one case, he didn't want to look bad to all who knew him. His mother was very much admired and respected by the entire community. Adding to it is that they lived in a very small town where everyone knew, pretty much, what everyone else was doing. So he made a big production out of everything he did. He would tell everyone how he was taking supper to his mother every day. What he didn't say is that he was doing the absolute minimum he could. Usually, her supper consisted of two hotdogs from the local gas station that sold them two for a dollar. His mother was living alone and he was not helping with any upkeep of the house. He would pick up her medications from the drugstore on his way home from work, yes. What he didn't let people realize is that he would open the front door, throw them in and leave without so much as a "Hello, how you doing?" Eventually, he asked a social worker to inform the rest of the family that she must go to a nursing home. She did not survive long in the nursing home and it eventually came out that he never even visited her while she was there. I guess it was out of sight, out of mind. Plus, he no longer had to worry what other people were thinking of him since he had done "the right thing" to get her the best care.

I have witnessed several examples of a different type of scenario involving narcissists acting as caregivers. In this scenario, the caregiver gets involved, again, because it makes them look good to others. They jump in and totally assume all control over the life of the one with dementia. They seem to be willing to dedicate their lives to that care and go above and beyond what is normally expected. I find them easy to identify because they come off as totally phony. "Oh, just look at him, isn't he so sweet!"  "It just makes me sooo.. happy that I can help her." "Doesn't she look pretty today? I love it! It's just like dressing a doll!" 

In cases like this, anyone who has ever been a caregiver for someone with dementia can quickly see that they are doing what makes them feel good and look good rather than what is best for the one they are caring for. These people are usually pretty quick to burn out on care giving. Once they do, they often blame it on the one needing care. "Oh, he just doesn't appreciate what I do." or "She won't cooperate or do anything I say." Once again, it is about them. They appear to be good caregivers until the novelty wears off.

I actually had a friend who jumped into being my caregiver with both feet. At first it was wonderful. She would take me out so we could have lunch, take me to women's meetings at my church and when I needed it, she would take me to doctor's appointments. One of the first signs that things were not what they seemed was at the women's group meetings. There was always an opportunity for everyone to report on something good they did for someone during that month. I never raised my hand and reported on anything I did. I always believed that I did those things because I cared, I could and that this is what Christians do. Every month, though, she would report on what she did for me. There I sat next to her as she was telling people everything I "needed" her to do for me and soaking up the praise she received.

It got worse. She insisted on calling me every day. I hate talking on the phone, really, really hate it. She was constantly telling me what I "must" do and what I must say to others. She was pressuring me to leave my husband and move three states away to where my daughter lives. I kept telling her that, yes, I would love to do that but that I believed in that vow I took of "for better or for worse, in sickness and in health." I will say that often she truly was a big help and stepped up when there was an emergency. As time went on, though, it just seemed like she was not only trying to prove to others that she was such a "good" person, but was also trying to control me. 

For my own state of mind, even though she was a help, I had to break those ties.

I have witnessed other incidences where people jump into caregiving to make themselves feel good about themselves, as well as looking good to others. I have actually seen a case where the person jumped in and took over as a caregiver, forcing out the other person who had been doing a seemingly good job of it. I later found out that her husband had been pressuring her to get a job and she used this caregiving responsibility as an excuse as to why she could not possibly go back to work. Later, when she realized just how much work it was, she dumped the person back onto the previous caregiver.

Those of us with dementia and the majority of caregivers for someone with dementia are extremely aware of how difficult the job can be. For someone to jump in due to their own selfish reasons is not going to result in the best care, physically, emotionally and mentally. For someone with dementia to be yelled at about how they don't appreciate everything the caregiver is doing for them, it can be totally demoralizing. 

For someone to make a big production out of taking over and acting as the caregiver and making others aware of everything they are doing, just raises red flags to me. Especially when they move the person with dementia into their homes, take over their finances and control everything they do. When this is done out of true love for the person, that is absolutely wonderful and a laudable action. When it is done to feel better about themselves and appear better to others, it is an absolutely selfish thing to do.

Yes the person with dementia needs assistance. However, the person with dementia needs love, respect, proper medical care and as active a life as possible while being provided with that assistance. When I say they deserve respect, I mean they do not deserve to overhear jokes about them, dementia or the funny or irritating things they do from time to time. They don't deserve to be talked about right in front of them, thinking that either they won't hear or they won't understand. 

Fortunately, the majority of caregivers are not narcissists and truly do all they do out of love. They know it is a pretty much thankless job, yet they willingly do it anyway. They keep at it through exhaustion, frustration and heartache. These are people who should receive the glory for what they are doing, but that is the last thing they would expect. These are the caregivers who need to be thanked. 

This week brings the Thanksgiving holiday to those of us living in the U.S. Let us all take the time to be thankful for the caregivers!

We ARE The Champions, My Friends

I did a lot of learning this past week. As you know, not only do I have bvFTD, but my husband has Alzheimer's Disease. The task of being his full-time caregiver can be extremely onerous, frustrating and exhausting a much of the time. I have done a lot of complaining about how family and friends, with the exception of my sister, run away in droves as though if they take an hour or two to help out, they might "catch" dementia. After my sister shattered her shoulder badly enough that she is out of commission for many coming weeks, I finally became determined to find some independence.

We, here in Pennsylvania, are fortunate that our state lottery system provides funds for Senior Services van service. You don't even have to be a "senior" as you are eligible at age 55 and at any age if you are disabled. The price per trip is usually between $1 and $1.50. I would pay more in gas if I was still able to drive. A couple years ago, before my sister was able to devote so much time to help me, I had utilized the van service quite a few times but it became more convenient to rely on her, so I stopped calling for the van.

I used the van for three trips in the past week. It means scheduling appointments carefully since the service starts early in the morning, but the last van is at 2:00 or 3:00 depending on which way you are travelling. It has worked amazingly well. I used it to go grocery shopping, to the chiropractor and to a medical appointment. It truly lifted my spirits to have a renewed sense of independence.

Also, this past week, I needed to make a 150-mile round trip for an appointment with my retinal specialist. There now is a retinal specialist in a nearby town, but I have been with Dr. Hoffman for over 25 years and we know and trust each other... me to trust his judgement and knowledge and him to trust my observation abilities and to know when to call for an emergency and when it is okay to wait until the next appointment. When a doctor is sticking a needle into your eyeball, it really helps to know him and have complete trust in him. So the long trip has never bothered me.

However, when you have no transportation, it can be difficult to arrange for an alternate. I finally became desperate enough to post a plea on my Facebook page for someone to drive me. I offered a generous payment and my step-niece stepped up and rearranged her day to take me. She and I have never spent much time together, so it was a great opportunity for us to get to know each other a bit better. So it ended up being a double benefit. We found we have even more in common than we thought we did. I knew her grandmother was dealing with dementia, but did not realize my niece had resigned her job to become a full-time caregiver for her grandma. She is really an amazing person.

I realized that I have to be more proactive in seeking out assistance, knowing that, like many others dealing with FTD have found, friends and family are not exactly beating down our doors to offer help.

A (nearly) life-long friend called to chat earlier this week and I boldly spoke up and asked him if he had any interest in seeing the movie "Bohemian Rhapsody" on his day off which happened to be the next day  I bought tickets for an afternoon showing, figuring it would not be crowded (good choice, there were only 10 people in the huge theater). I knew my husband would be okay for a few hours during daylight. (I did not realize how long the movie was so it was dark by time we got home and he was agitated, so I must be more careful about that since it gets dark so early now.) I packed up my earplugs and off we went. I did not even need them. Yes, it was loud but only during the music parts and that was just fine because Queen music has to be played loud, doesn't it? Queen and vintage Beastie Boys, for me, must be blasted!

Despite my apathy that comes and goes, I cried twice during the movie. Of course, one time was when Freddie Mercury died. The biggest cry, though, was when the song "We Are the Champions" was being played. The words really hit me:

"We are the champions, my friends,
And we'll keep on fighting 'til the end.
We are the champions,
We are the champions,
No time for losers,
'Cause we are the champions... of the world." and some excerpts from the stanzas:

"...But it's been no bed of roses,
No pleasure cruise.
I consider it a challenge before the whole human race,
And I ain't gonna lose." and...

"And I need just go on and on, and on, and on."

These words hit me so very hard because it was this week when I became determined to regain some independence and I realized that these words could be sung by every one of us who is dealing with FTD. It hit me that we ARE the champions. I don't think many people realize how strong we are forced to be and how most of us step up to the challenge to keep going on, keeping strong and fighting until the end.

To sum up my week, I found some independence and "I ain't gonna lose."  I will still have bad weeks, bad days and bad moments but I "will keep on fighting 'til the end." I know I am the edge of being corny, but, damn... it is irrefutable in my mind, as I wanted to get up and shout at the end of the movie, that we truly are the champions. We keep on fighting this disease and the naysayers who insist there isn't anything wrong with us. We have learned to stick together and fight together. We have learned to love each other, lean on each other and learn from each other to find the courage and determination we need to keep on fighting and struggling to find comfort and I will cling to that 'til the end.

We ARE the champions, my friends!

It's Always Something

Having FTD just plain sucks. Sorry for the in-your-face verbage, but that is the only way I can explain it so that people just might understand. It seems like every day brings new frustrations along with it. So even though we celebrate each new day, some days it just becomes hard to do.

Having FTD means that you must rely on others for nearly everything. I need help grocery shopping, going to the bank or post office, doctor and dentist appointments. I have been extremely fortunate that when my husband was diagnosed with Alzheimer's and could no longer function in the capacity of caregiver, my sister stepped up big time. Even though she lives about fifteen miles away, she drives me where I need to go, sometimes three or more times a week. She has done this every time with a smile and a reassurance of how happy she is that she can help me.  Everyone should be as lucky as to have someone like her.

Unfortunately, two weeks ago, she fell and shattered her shoulder. The stress of not being able to be by her side while she was in the hospital for 10 days was astronomical. Fortunately, my awesome brother in law not only called two or three times a day with updates, he also brought her here to visit with me yesterday. 

The worst part, for her and for me, is that she cannot drive for 6-8 weeks. What do I do now? Well, I am getting reacquainted with our county's Senior Services Transport Van. They are very inexpensive, but the times are quite restrictive. For instance, I could get a van to take me to my scheduled dentist appointment next week at 2:30. Unfortunately, they would not be able to bring me home because the last van leaves that part of the county at 3:00. I rescheduled for next month, but since my appointment is at 1:20, they cannot guarantee I will be there in time unless I take the 12:00 van. It makes it difficult for someone with FTD to plan life around their van schedule. It is the same for every appointment I have. I am guessing I will get to know the van drivers pretty darned well.

I am thankful for the service though and don't mean to be whining about it. Ten days or so ago, I was able to find a friend to drive me to the grocery store. This week, no such luck, so I will be taking the senior van. Should be interesting because grocery shopping with someone along with me is a challenge in itself!

I am getting better at asking for help. I called several family members and friends trying to find someone to drive me 90 miles to my eye specialist this week for a necessary appointment. I finally found my step-niece to drive me, which is quite awesome of her to be willing to do. Out of everyone else I tried, either they couldn't do it, or they said they probably could, but when I contacted them again to pin it down, surprise... can't do it anymore.

Being the caregiver for my husband who has Alzheimer's Disease is an extreme challenge for my with the limitations FTD pours down on me. With the transportation issues, along with the constant concern for my sister and regret that I can not help her despite how much she helps me, and the 24/7 care of my husband, I am stretched beyond my limits.

These are the kind of things that so many caregivers fail to realize. Many are not able to recognize how difficult and frustrating it is for those of us with FTD to tackle every little thing all day and all night long. A huge number of them see us sitting around doing nothing and adding to their workload constantly. Yes, many of us do. However, it is not because we are lazy or do not care. We do have apathy, but the realization that we are seen as an imposition is heart breaking. We don't do the things we used to be able to do because we don't want to. We don't do them because, first of all, trying to get through a day with FTD is exhausting. The other factor is that we may not remember or understand how to do those things. It breaks my heart when I find yet another thing I can no longer do. I am sure it is the same for others with FTD as well.

Let's compare my sister's situation to mine. She has a huge sling/brace apparatus that she must wear 24/7 for the next six weeks. Anyone who looks at her immediately realizes that she has limitations as to what she can do. People automatically hold doors for her and offer to bring in meals, etc.  For someone with FTD, people cannot see what our limitations are and jump to the conclusion that we are lazy or just don't care enough to do things anymore. 

People can often recognize those with Alzheimer's Disease because their symptoms are at times visible to those observant enough. With FTD our symptoms are often hidden.  Add in the fact that we can often get "up" enough to seem normal to others. I firmly believe that is due to pure adrenaline. The adrenaline allows us to function at a higher level than normal. We pay for it though. After expending the energy to be as normal as we can, the adrenaline crashes and we suffer for at least a day, sometimes longer. We can be totally exhausted, irritable and difficult to get along with. It is pure and total fatigue, physical and mental.

This is difficult for others to understand. I understand that for strangers and those with limited experience with FTD. I do expect that our care partners and loved ones should understand and compensate accordingly. I do realize how exhausting caregiving can be. I am doing it now for my husband and have been caregiver for previous family members with dementia, now thought to be FTD.

I will actually run the risk of offending caregivers here, because today I am exhausted enough and have enough apathy that I just don't care. I become resentful when I hear or read caregivers complaining about how exhausted they are and how much they need to have a respite from their care giving role. Don't get me wrong now, I am not saying they do not need or deserve a break. What I am trying to say is that I resent that none of us with FTD can have a respite from the disease, not ever. Trust me, we are just as sick and tired and exhausted from dealing with the disease as any caregiver can possibly be. 

I feel resentful, and yes, probably jealous when I hear about their wonderful respite adventures. I am not proud of this at all, it is just the way it is.

While I am on this subject, I am going to really take the risk of offending another group of people. I am jealous and resentful every time I see or read a story about the brave FTDers and their amazing caregivers who travel, attend banquets, dine at fancy restaurants, visit exotic places as well as museums, the theater or more despite their illness. I hate that I feel that way, but I cannot deny that I do. Most of the FTD'ers that I know are not able to do things like that. Not only do we not have the energy or ability to do them, but FTD drains all of our financial resources to the point that we can't. The only travel I do, as well as a lot of others, is to the annual AFTD Education Conference. 

I would never suggest that these other FTD'ers should not do and enjoy everything they still can. It goes without saying, as far as I am concerned, that everyone of us should do everything within our resources to enjoy the life we have left. Those who are able to do it on a grander scale than I can, I actually applaud you and encourage you to keep on doing it all. 

The point that I am trying, maybe not so well, to make is that we need to hear about the others. The magazine articles, films and broadcasts need to include the ones who are struggling... the ones who can no longer afford to go to the doctor or to have the tests they need. Either they no longer have insurance or the co-pays are too much for the budget. This would include those who are just enough above the poverty level that they do not qualify for Medicaid or any other assistance programs.

The ones who can still do, and afford to do, these wonderful things certainly should be celebrated and honored. Though sometimes I think it is the ones who have the least yet manage to cope with FTD (or any other disease) are the ones to be honored and applauded. The ones who struggle to be able to put food on the table and still pay for their medications. are heroes to me.

Now, before you accuse me of feeling sorry for myself or throwing stones, I am in between my two examples. I am not in a financial position to travel, mostly because I would also have to hire someone to come in and stay with my husband, but we are financially stable. We are living comfortably on our Social Security and retirement savings. So it is not just sour grapes. I just still have enough empathy left in me that I worry about those who are not living comfortably.

This blog is an excellent example of how the frustrations and exhaustion of FTD can affect someone. Both are a drain on me and, obviously, sometimes bring me to the point of resentment and anger. Again, I am not casting stones at anyone, not implying that those of us with FTD are better than our care givers nor that anyone should feel guilty about what they can or cannot do. I am merely expressing the frustrations that I am feeling right now, and nearly all the time. We are all in the same boat, every one of us... every one with the disease, every caregiver and everyone who loves them.